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waitesd

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Reply with quote  #1 

New Board Member Sandy Cech and I are in San Diego at the moment at an exhibit representing CVSA at the American Motility Society Meeting.  THere are approx 300 gastroenterologists (by far the majority adult physicians), nurses, pharmaceutical medical officers, etc.   The program includes a 20 minute case presentation on CVS set up with Dr. McCallum presenting a case and Dr. Paul Hyman (both on our advisory board) commenting.   About 1/2 hour before the presentation, Dr. McCallum asked that Dr. Fleisher and Dr. Kevin Olden (also advisors) join the panel. 
 
 
Dr. McCallum presented the case and then handed the mic on to the panel.   Very spontaneously the 3 responders, created a combination of perspective about the suffering, the great need for care in adults, the treatment.  Dr. Fleisher painted a very clear historical picture including the lenght of years to diagnosis.    Dr. Hyman started off asking  for a show of hands of those that had diagnosed cvs in the past.   About 10 percent of the audience raised their hands.   Dr. Hyman then raised his voice, and respectfully gave the audience  a mandate to START DIAGNOSING CVS !   He was firm in delivery and spoke on behalf the level of suffering.   Dr. Olden referrred the "explosion " of interest in adult CVS.  Made a clear strong statement about having physicians tell their patients to go directly to their physicians and not thru ERs when in need of care.     I'm a bit biased but it felt historical - like the beginning of a new era of care for adults. 
 
Yesterday Sandy and I drove to LA to meeting with Dr. Yvette Tache - also an advisor -  we toured her lab space, met her fellows (researchers).  and then spoke for about 2 hours about strategy for CVSA, medical advisors, scientific meeting content.    It was a power packed visit  generating optimism, hope, tangible evidence of progress - even though painfully slow.    It's been wonderful to have another set of eyes and ears taking this all in with me.    There should be an enthusiastic response by raising money,  continuing to volunteer how ever you can, etc.   - 
 
So - take hope -  I only wish each of you could be with us here to experience the moments.    
In Dr. Fleisher's words -  PRESS ON !    

Kathleen Adams   (CVSA prez & research liaison)

 


 

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mjgannaway

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Posts: 68
Reply with quote  #2 

Kathleen,

     Thanks for the update.  I think we all owe our Doctors and advisors a pat on the back for what they do for us each and every day. I think that is amazing that they all travel from every part of the US to San Diego to represent every CVS patient out there.  All these people are the voice for our family and loved one that are suffering.  Kathleen, Thank you to you and your team as well for all the hard work you put in for all of us.  I think I speak for avery one on this board when I say " Thank You for your dedication".  Sorry for all the babbling,  It has just been an extremely rough year for my family, and you don't realize everything these people do for you until you are leaning on them as your last leg.  I think we owe them all a great big THANK YOU!  Deb waites...You are amazing too!  You deal with all of us every single day.  You are an amazing person as well.

Matt Gannaway

Ethan's Dad


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Matt Gannaway
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dowdd

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Reply with quote  #3 

Hello, My family also echos a big thank you for everything that is done for us, from behind the scenes to the center stage of CVS. Before we found this site we felt like we had no hope at all, then everything changed. Debra you have been invaluable in your suggestions and in getting all the information we need to go forward in getting treatment for our loved ones. Kathleen, I still remember how desperate I was to get help for my son after I found out that he had CVS. You called me at a pay phone while you were changing planes, and I couldn't believe your own story and what you and your daughter went through. You were so encouraging and it felt so wonderful to finally talk to some one who really understood how we felt. Dr. Fleischer, It is hard to explain what you mean to our family and we only met you once. You have had more of a positive impact than any doctor that my son has ever seen.(and he has seen many) Because of your treatment plan for him, after 13 years he feels like his life was given back to him. As his mother, saying thank you hardly seems enough. Our family will be forever grateful. Also to those of you that work hard behind the scenes getting the word out about CVS, I thank you for caring about all the faces of CVS, children and adults alike.

 

Sincerely, Deborah Dowd

 

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beckyroms

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Posts: 79
Reply with quote  #4 

We have our first appointment with Dr. Hymann in March and after reading this post I'm so ENCOURAGED! It sounds like Lilly will be seeing a doctor very passionate and dedicated to beating CVS. Thank you for the update!

 

Becky

Lilly's mom


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Becky,
Proud mom to Lilly, Sophie, Emery and a little boy due in June!!




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Reply with quote  #5 

it brings tears to my eyes to know that the word is being spread so rapidly about our illness.  i don't feel so alone when i read such positive updates. thank you.

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Reply with quote  #6 

I just wanted to let everyone at CVSA know that you are making a difference. This conference in San Diego ... Our GI from Mississippi attended it. We had been struggling with my husband's attacks for about a year. Anyway, when our dr. got back from San Diego, he made a point of calling us at home and telling us that he thought Hank had CVS. That call was the first indication that Hank may have CVS, and that night the dr. directed us to the cvsa web site. He's been working with us on meds and ER plans ever since.

 

YOU ARE MAKING A TREMENDOUS DIFFERENCE. THANK YOU!!!

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Horanimals

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Posts: 1,317
Reply with quote  #7 

Jennifer,

You can probably imagine how extremely happy your post made me today.  My heart literally skipped a beat!


This is wonderful news, and with it, I hope that your husband, you and your doctor (who gets a hug!) find a plan that works for him.  It's so awful to go through this before knowing what's going on, so I also hope that knowing brings comfort and hope.

Thank you for sharing this wonderful, wonderful news!!!!

And welcome to the board!!!!  Ask anything, share anything!!!


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~Lesley
mom to Riley-12, CVS since age 2, & Autism, Jake-21, and Josh-16

There are two ways to live your life:
One as though nothing is a miracle and the other as though everything is.
~Albert Einstein
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JASerino

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Reply with quote  #8 

 

I just got Goosebumps!  What a wonderful post!  Thank you so much.  Its so great to hear that we haven't been working for nothing...that somebody is hearing us!  ~Joely, 26, CVSer in NJ


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"There is a crack in everything. That's how the light get in."
~Leonard Cohen
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BDavis

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Posts: 677
Reply with quote  #9 
Amazing, simply amazing.

I read this entire thread to my mom, and we both couldn't help but crying- but for the first time in our history with CVS, we cried tears of joy.

I can't say thank you enough to CVSA, and the Doctors who are so dedicated to helping the people who suffer from CVS.

Thank you!!!!!!

-Britt


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"I can get sad, I can get frustrated, I can get scared, but I never get depressed - because there's joy in my life."
-Michael J. Fox :wave:
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klconner

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Reply with quote  #10 

I've been reading the board here for almost a year now.  It is amazing the stuff I have learned both from the articles and from my fellow CVSer's.  I am both happy and saddened by the number of new people on line.  Saddened because they probably found CVSA because they or someone they know and love is suffering.  Happy because thanks to CVSA they don't have to suffer alone.

 

CVSA has made such a difference in my life, and I can never thank the people here enough.

 

kate


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With perseverance, the snail made it on the ark.
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shirlie

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Reply with quote  #11 
Am with you Joely and the goosebumps and agree entirely with Kates post- and I thank the lord I am in a position to communicate with you all over the net and privileged to be a member ... hopefully the  message will travel over-the-pond from the doctors .....

with all my heart thank you
Love
xx Shirley xx
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Reply with quote  #12 

Kathleen,

Thank you. That update made me want to cry in joy/relief. Sense I met Dr.F I can almost picture it! Keep up the good work! I am grateful to know that folks are out there fighting for our benefit gives me good/clear/happy - hope! All your work WILL pay off. Tis' only a matter of time. Fight the good fight for those of us that can't.

 

I feel you KatZ are hero's to me.

Not a lightly made statement^

 

May your days be long and your nights be happy.

Mark

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MiamiLargo

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Reply with quote  #13 
Would anyone have updates on the research of Dr. Yvette Tache and the CRF release factor?
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wynnak

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Reply with quote  #14 
This post is before even I joined the message boards. The discussions now are more geared toward the vagus nerve. The nerve that runs from the brain to the gut. Dr. David Levinthal (nuerogastroenterology and motility specialist) has been looking into the them a bit. he had a presentation at the CVSA Conference held last month, but it was over most peoples heads. He touched on the different nervous systems and factors affecting them.. But that has been all that I have heard about since then. 
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Blynda
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MiamiLargo

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Reply with quote  #15 
Wonderful, thank you!  I wrote him after your messages last week and he responded immediately.  We are in touch with his office now and I hope this is the right fit for us!
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